The winter season

I literally hate this time of year. Autumn back in September when school went back was hard enough, but now seems every child under the age of five has a snotty nose and a cough. And every parent, and every person that works with children. There are sick people everywhere.

To a neurotypical kid this is no big whoop. For us… it’s a huge deal.

There are so many NKH kids in hospital at the minute, fighting off what would be an everyday cold to anyone else. Their parents and medical staff working overtime to make sure they’re able to breathe, to prevent a snotty nose becoming a chest infection or even something more sinister.

For Mikaere… he’s on his third cold right now in as many weeks. Last week we were in A&E because I couldn’t wake him. He usually has a morning nap from 9:30 to around 10:30, 11.

This time he’d slept past 12. And then past 1pm.

It was a weird one. Mikaere had a snotty nose. Because of his low tone (or even possibly because of his medication) he’s not able to cough the mucus from his lungs up to his mouth, it gets about half way. Awkwardly it’s at the back of his throat and ends up dripping down over his airway.

His body, knowing this is a problem, gags. Mikaere has a super sensitive gag reflex, and this triggers a projectile vomit. Like, out his nose, completely emptying his stomach type of projectile vomit. Vomit shooting across the room kind of projectile vomit.

We suction the best we can, but we have to be careful not to over-suction least we damage his nose (going down his mouth causes a vomit every single time). For those who don’t know what suctioning is, it’s exactly like it sounds. We have a hospital grade suction machine. A bit like a tiny vacuum cleaner. We attach a flexible catheter (like a very very thin and flexible hose of a tiny vacuum cleaner) and have been trained to literally suction out the mucus Kai can’t shift himself. Usually we go down his nose. It’s traumatic for everyone, but is good for him in the long run, so we do our best.

Truth is we can’t stop all the vomiting. We might prevent one in three vomits with suction.

Those other vomits? They happen at any time. Before feeds, during feeds, after feeds. It wasn’t that he couldn’t tolerate the feed. It’s that he couldn’t tolerate the mucus.

The worst thing was that it meant Mikaere wasn’t keeping meds down. If the vomit happened within fifteen minutes of meds, we could regive them and hope he’d keep them down. But he rarely did. We couldn’t regive meds if we didn’t know how much he’d have absorbed and how much he’d vomited.

And so without his meds he became lethargic, and impossible to wake. Even with pain.

However, because he was sleeping, he wasn’t vomiting. He was positioned so his mucus would drip down the back of this throat, to his stomach, keeping his airway clear. When he was lethargic like that, we could feed him and give him meds. Which would improve his levels, so he’d wake up again and we’d be back to the mucus vomiting.

It was weird and cyclic, and we were in and out of the a&e while we tried to figure out what was going on.

That’s what happens when my kid gets a snotty nose. That’s not a chest infection or anything serious, that’s just a snotty nose and a cough.

Which is why we’re so particular about illness. About people not visiting if they’re ill. About not visiting others if we know they’re ill. About people staying home from work if they’re ill, even if you “feel okay”. If you feel okay and you pass it on to Sam, there’s a good chance Sam will pass it to Kai.

(So sidenote: people of BV, stay away from Sam when you’re ill. Don’t go into work, work from home. Please).

Illness and colds are huge right now. Hate it. This time of year can suck it.

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

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Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.